Adventures in brain tumors: part one of many

 Photo on 2009-11-13 at 14.13

You know it's going be bad news when the ER doc slides a chair over to sit on. Good news is quick, a simple "You're gonna be fine! You can go home!" Seeing that chair slide over with her let me know I was in for some long explanations of bad news.

Of course the worst part is that I went to the hospital with a bad flu and two hours later this ER doctor is explaining that during the routine CT scan on my head, a lump was found. She couldn't tell if it was blood, a mass, or a collection of both. She couldn't tell if it was benign or cancerous either. I was immediately rushed to the area major hospital OSHU for MRI scans that could provide higher resolution data.

I finally got to experience the horribleness that a 45min long MRI I've been hearing so much about. That really is a ghastly creation, sliding me into a jet engine whirring to life for 45 minutes with about one inch of clearance above my face and an entire field of white to stare at until it's over? Figure out a way to project a few Simpsons episodes or at least some music to overcome the loud, claustrophobic noise machine that is a MRI.

I forgot to mention that before I got my MRI, I was waiting in their area and a technician asked me to move from my flat hospital bed that I was sleeping on to a waiting wheelchair before I got transferred to the MRI sliding test bed. I remember saying "Ok, I guess…" and as soon as my ass hit the wheelchair seat I said "I'm going to pass out" to the tech. I blinked my eyes and when I opened them six people were above me on a bed with an alarm sound in the distance. The head person in charge asked me if I do recreational drugs "It's cool here man, no judgments, it just helps us help you" and I said no, I've never done any recreation drugs (which is true). When I said I'd just taken a few doses of Codeine cough syrup the night before he rattled off a bunch of what I guess are street names for codeine based highs that were each more hilarious sounding than the next. I was exhausted and just coming back into consciousness so forgive me for not remembering the real names but it sounded something like this:

"Oh you took Codeine huh? You doing Night Rammers? Doing Robot Jammers? Doing some Springboard slammers?"

I had to confess that without a copy of UrbanDictionary.com, I wouldn't even know what he just asked me but that no, I didn't take any more than the recommended doctor's dose.

I'm getting ahead of myself, let me go back to the beginning for the sake of friends wondering what was up with my initial tweet (this is long and exhausting and I don't mind if it's tl;dr for you).

I started feeling a sore throat last Saturday night, which progressively got worse until Tuesday/Wednesday when I slept about 16hrs straight and still felt awful. I went to my local ER because our normal doctor group was slammed with patients (2 local people have died of H1N1 so far). They said my chest was clear so probably no swine flu and didn't bother to swab my nose, then sent me home with Codeine cough syrup which I hadn't had in probably 30 years.

When I got back home, I took some of the cough syrup and went back to sleep. At this point I lost track not only time but also the concept of time. I moved about in a fog, occasionally getting up to drink water and/or pee, and when I thought four hours had passed, I'd take more cough medicine. This continued until I remember passing out on the way back from the bathroom to my bed. I remember feeling like my limbs weighed 500lbs and I couldn't get up as badly as I tried and wanted to. I kept attempting, and struggling until I heard a slam and crack loud enough to wake me up enough to realize I had just smashed my arms, shoulder, and head against the bathroom sink counter/cabinets. I sort of stopped trying to get up so badly and the next time I tried to get up again my wife was over me, talking into the phone with 911 emergency describing me and she kept saying "seizure" and then bright lights came on, I rolled to my side and I was talking to paramedics.

The paramedics thought I was just exhausted, dehydrated, and a bit out of sorts on Codeine. I followed my wife's lead and agreed for them to ambulance me to the local hospital. The local ER doc literally threatened to give me a spinal tap if I agreed I had a seizure versus a simple passing out, so I said I just passed out. The doc eventually caved to a CT scan just in case I injured my head during my fall. That's when I got the sit-down about the mass. It was just beginning to hit me: brain tumor. Brain surgery. Holy Fucking Shit. What? I just turned 37 last month, I live a completely clean nerd lifestyle, and this is the thanks I get?

Oregon Health Sciences University Hospital (OHSU)

Fast forward to OHSU medical center and there were lots of tests, lots of blood samples, and many bags of IV fluids. I've never been to a hospital as a patient in my life and wondered if I'd be freaked out by the whole thing so it's a stroke of luck that my first visit was during a period of such exhaustion that I got through everything while fully relaxed (My history of blood samples includes lots of fainting, swearing, and shouts of pain, followed by embarrassed walks out of the doctor office).

My room at OHSU was nice and I got it all to myself (nerd note: they have a fantastic free open wifi network that operates somewhere in the 30-40Mbps range). A few sleep cycles interrupted by nurses taking my temp, blood pressure, and pulse and suddenly a room full of men shrourded in temporary facemasks and scrubs wakes to ask if surgery in the morning is ok. I mutter "I guess…?" because I can no longer tell what time it is or what is coming next and surgery would be just one more thing happening to me. I mention that I feel too sick to handle recovery right now and that we might want to postpone it, they say pshaw, we'll go full steam ahead.

At some point I'm told the whole story. I have a walnut-sized tumor sitting on my pituitary gland, at the base of my brain, separating my optic nerves. Usually people notice changes in vision immediately but I have one bad eye from birth I don't really look out of so I didn't notice right away (I did notice it's harder to "switch" over to it in the last year or two). They have to operate and remove it, or in some cases if it's a tumor of a certain type it can be shrunk down and even managed completely with some hormone meds. My hormone levels across the board are very low, solving multiple issues I've had for the last couple years and wondered about constantly. They wouldn't know until later if my tumor was treatable with meds, but I should anticipate surgery in almost any case.

Twitter

About this time, my good friend Anil Dash takes my story to twitter to ask people to spread the love for me and when I take a first look at the hundreds of comments, I'm overwhelmed with tears and actually starting to dread surgery for the first time, on the off chance I die in the operating room. It's oddly amazing to see the outpouring on twitter, and in a weird way I feel like I got to attend my own funeral and hear all the nice things people said about me after there was a chance I could be gone. It was all quite a surprise and I felt awed and loved and supported by everyone's good thoughts and kindness towards me. As I shut my laptop I feel like I just crowd-surfed the entire internet as they held me high above and as cliched as that sounds it was a very good feeling to sleep to. As people say at funerals, don't forget to tell the people you love the things you'd say at their funeral, when they are still alive.

The Surgery Train

Late Thursday night I got a double dose of cortisone steroids to "strenghen up" for the next day's home run derby surgery. I'm warned of two side effects: fitful sleep and nausea. An hour later when a nurse checks my vitals, I figure out what nausea means and cough up the dinner I ate. Later when I finally get to sleep it's immediately a nightmare where I'm being chased or yelling at a longtime friend and it feels like it lasts for hours, then jerking myself awake in a cold panic and realizing I've been asleep for seven minutes. Going back to sleep repeats the cycle. This continues for 6 to 8 hours, as I awaken hundreds of times in the night. Normally I would be nervous the night before surgery and sleep poorly but I was completely at peace with it and ready to go (because I knew I'd be knocked out away — hey more time jumps!) but it was the longest night of my life. As the steroid wears off in the early morning hours, I hit full sleep and I'm awaken by a series of doctors and nurses preparing me for various stages of surgery, all while I'm half asleep. There's the two-vial blood draws. The double-time IV drip. Then the surgeons are back in their obscured garb.

The surgeons in the room number in the half dozen (it's a teaching hospital and that's to be expected but in a half asleep haze and their medical shrouds I feel like I'm getting constantly awoken by Jets or Sharks cast members ready for a rumble). The surgeon says in neutral tones that we have two options. Option one is to go ahead with surgery as planned and they swear I'll be alright after, get released home on Sunday. Option two is my bloodwork showed I had high levels of prolactin, which indicates a tumor that responds well to medication and possibly shrinkage, even eliminating the need for surgery completely in some cases. The choice was mine. I said since I was still so exhausted and feeling horrible with flu that I'd rather wait, and with that, the surgery train stopped and I could eat and drink water again and a parade of pills started coming to me.

Kay showed up soon after and we started seeing a bunch of different doctors saying somewhat different things until we finally got a great doctor with a sense of empathy that sat down and really explained everything to us in detail and answered any questions we had and also mentioned I should go home that very day and treat it with hormones in the future. This came as a surprise and eventually the other doctor teams (I could never tell who was in charge) agreed and I went home to sleep it off with a fist full of hormone meds.

Upsides

Three rays of light in all this, thanks mostly to my longtime friend Dr. Jason Levine:

  1. The neurosurgeon that would have done my surgery was one of the best in the country and specializes in base of the brain operations like mine would be. It's actually a simple up through the nose, drill a tiny bit of bone and clean out the tumor, which is easy with a nose like mine.
  2. Jason on my chances of meds vs. surgery "The good news is that it looks like something like 90% of
    prolactin-secreting tumors respond to cabergoline or bromocriptine, and
    that the bigger the tumors, the more they are likely to respond in
    terms of shrinkage.  In addition, around 70% of the tumors responded
    enough that the patient was taken off of the drug, and then they
    remained with normal prolactin levels for life, without surgery or any
    other intervention."
  3. Unbeknownst to me, a close friend has been living with a similar thing for years, treating it with medication.

Thinking this through, I've had low-hormone symptoms for a couple years. Despite a couple years of hard training on a bike for races, I continued to finish in the back of the lowest classes at race events. I've been going to a gym for a year and pushed more weight every week but gained almost no muscle mass. Losing weight this past summer was an enormous task to counteract the 30-40lbs of unexplainable weight gained over the past several years. My libido all but disappeared. I not only took frequent naps, they weren't the sign of my laziness but began to feel absolutely necessary to function each day, and this was with nightly sleep of 7hrs or more.

All symptoms pointed to depression, but I didn't feel that bad about things. I actually quite enjoy my life and everyone in it these days but it boggled both my mind and my wife's mind for the past several years. Figuring out there was another explanation is like a huge weight lifted off our shoulders.

Conclusion

The last few days were my first adventures in losing the concept of time. Not being a recreational drug user or heavy drinker, I've got no experience with blackouts or loss of time perception and this past week was my crash course in both. The days in the hospital didn't go by so much as a blur as they did a smear. I was either asleep, passed out and seizing, lethargic, and very briefly completely awake each day as an army of medical professionals grilled me with a couple dozen identical questions and eventually life altering decisions were presented to me when I had been awake for all of 30 seconds. 

I came away from this experience feeling the OHSU hospital in Portland continues to impress me with its amazing staff, but that the process of dealing with patients could be done in a more efficient manner. I know they all sort of kept an internal log of my story but to constantly be asked the same things by different groups of people and then not know who is your main decision maker was a challenge. Given my state of sickness and exhaustion, I felt like what an elderly man might feel like in the medical system. I had trouble understanding what people were saying as they woke me from sleep, I was constantly poked and prodded without descriptions of what results entailed, I literally wanted to "phone a friend" when those surgeons asked me in the early morning hours what I wanted to do.

Overall, I'm in a much better place and just trying to rid myself of a really bad flu, cough, and cold as I take fist fulls of hormone meds and await a barrage of additional office visits and the many required blood workups to see if this is all working.

I'm actually quite optimistic at this point. Oh, and I'm home and not in the hospital like these photos suggest.

 Photo on 2009-11-13 at 15.56

187 thoughts on “Adventures in brain tumors: part one of many

  1. Another strong American Prayers work! I’ll give my all
    Your dignity in a hospital gown is inspiring. Thanks GBA

    Like

  2. I came to this through Dooce’s tweet… and wanted to wish you well.
    You very fortunate, in some ways, to have received the medical attention you did — many people suffer with vague hormonal problems for years without getting a diagnosis… so that is so excellent for you. Well done to your Doctors!
    I too have a pituitary tumour and am going through the diagnostic process. Mine isn’t a prolactinoma though so surgery is in my future.
    There are some great support resources for Cushing’s Disease sufferers, given that its all so new if you ever need to talk to others about it, feel free to hit me up 🙂
    xx

    Like

  3. Glad to hear you are feeling better. Good luck shrinking that thing down. On the bright side, think how bad ass you’ll be when you can bike at full strength.

    Like

  4. My grandmother had the surgery in her late 70’s and after the recovery (intense headache and severely bruised face) she resumed a normal life with absolutely no more problems! They also removed hers via the nasal area. Good luck!

    Like

  5. Good news, and a well-written, informative update. The usual thanks and a heartfelt “keep getting better.” Also, you can expect this post to be found and read into the future by patients searching the web for “lump in brain,” “brain tumor,” and “hormone therapy tumor.” It will help them feel better; for that, and presuming to speak for them, I thank you.

    Like

  6. Oh, a prolactinoma! I guess it’s one of those “if you’re going to have a tumor at all it might as well be this one” situations. Feel better soon.

    Like

  7. So glad to hear this more positive news about your ordeal, Matt! And amazed at your ability to produce a not-only-coherent but actually enlightening (as well as entertaining) piece of writing in its still-recent wake.

    Like

  8. Thanks for sharing so much of the story, Matt. I’ve been thinking and worrying a lot about you, very glad that a relatively simple course of medication is the best course of action! Looking forward to seeing you soon.

    Like

  9. Glad you’re out of the hospital and I’m sure you’ll be back on the bike soon. Also, 45 minute MRI? bitch please. I threw up DURING my 2 hour MRI (okay, they took me out at that point). I didn’t have a brain tumor though, so you win this round.

    Like

  10. You don’t know who I am but I have lived a similar life when my mom’s neurological condition went undiagnosed for four years.
    I wish you strength.
    I send hope and courage to your family because although you are the one who is sick, they feel helpless.
    Thank you for this beautiful and moving post.

    Like

  11. Slow-growing, long-term, with a chemical in your blood they recognize…no wonder they were prepared to not do the surgery. Sounds like they have ruled out cancer.
    So this is just your brain’s way of getting your attention. And everything will be better from here, as treatment will make you feel better than you felt the week before all this started (and the year before all this started). What great news!

    Like

  12. soooo relieved and pleased to hear it!
    (…but,, but… it would have been such a cool transphenoidal approach!!….)
    really delighted it explains so much and you’ll be back to normal in no time!!!

    Like

  13. Matt, depending on the scan you can have headphones and such in the MRI machine. You can even often pick your own music. The ne you had doesn’t leave enough room around your head for this though. At least that’s what I was told when I had the exact same scan done.
    I know exactly what you mean about waking up to get well wishes on twitter. I knew my girlfriend would be fretting about the surgery, so I set it up so that I’d be updating while I was on the table. I thought this would distract, amuse, or occupy her. I woke up to over a hundred people wishing me a quick recovery (including one from you!). It did make me feel better to know that some people did care enough to say they wanted me better.
    I am glad to hear that you have some options on how to approach this. Surgery may still be the route you’ll go, but at least this way you can spend some time getting acclimated to this idea.
    One of my suggestions is to ask for copies of your scans. I got a CD full of them and and was able to use a free open source Mac app called OsiriX to view them. I don’t know why it made a difference to me to be able to see this, but it did. I’m obviously not trained to know what the heck I am seeing, but being able to do it at home meant I could spend as much time as I wanted with each image.
    It’s good this was discovered. Hope everything turns out well.
    p.s. can you get PB to make it so we can sign in here and post using our metafilter credentials?

    Like

  14. Best of luck to you during your recovery; my dad just discovered last week that he had a very large (fortunately benign) brain tumor and had surgery for it Wednesday. We’re starting a long recovery process now, which is a bit daunting, but as you said — it’s nice to know what the symptoms he’s been experiencing the last few years were.

    Like

  15. Dude, I think the mose horrifying thing in the story was the MRI-that sounds totally unfun.
    Anyway, Ralph and I will keep praying for you…
    Hope you feel better really soon, and hope the meds totally kick that lump’s butt!

    Like

  16. Matt,
    I have three friends who have had recurrent brain tumors and had two or three operations to have them removed. The good news is: they almost always stop recurring. These three friends have been tumor-free for 20 or more years now. That’s 100% of all the people I know.
    My wife, Maria João, has advanced breast cancer and I recently suffered a full-on MRSA infection on my prosthetic hip as well as a predictable alcoholic hepatitis.
    It’s boring and frightening and takes a long time to go away – but, it seems to me, you can’t get through life without at least one awful experience which makes you glad to be alive.
    Every single color becomes brighter; every morsel tastes better. There’s no better feeling than knowing that it’s better to be temporarily sick and alive than sick all the time or dead.
    The boredom is the worst. That and everyone around you reducing you to your illness. Distraction and taking every minute at a time is the best strategy.
    Don’t forget that it’s you who decides what your day was like. It’s you who decides whether it was the day you were diagnosed or the day your children kissed you or when you watched a particularly good film.
    You get to decide. Not them. Not the doctors or the onlookers. Or your friends who selfishly want you to be brave and present a happy face, just to prevent them for worrying about you.
    My heart goes out to you – but it’s your heart that matters. And your brain: you didn’t really believe all that intelligence was free, right?
    Think of the tumor as a mass of conglomerate stupidity (brain cells of the same feather) that came together in order to guarantee easy removal amd, most of all, that your intelligence and lucidity weren’t affected – as they would be if they spread about.
    You’re doing the right thing, Matt.
    Keep doing it and all will soon be well. Even if you don’t keep doing it, all will soon be well. But it’s quicker and easier if you do.
    Um abraço amigo,
    Miguel

    Like

  17. I’m so glad to see this update, and so glad you’re feeling better (well, barring flu symptoms, anyway). I love the image of you crowd-surfing the internet!

    Like

  18. No we don’t! …Which is to say, how can you have the full demographic of moderators if you don’t have the tumored and the tumorless, right? Ok.

    Like

  19. Thanks for the full update. Josh and I have been worrying about you. I feel comforted by details (and I get the feeling you do too) and between the details in your post and all the happy anecdotes in these comments, things are sounding really good. It sounds like you’ll probably come out of this better than you went in! Hope you feel better soon.

    Like

  20. An amazing story – I’m sorry you had to go through it, and I hope the worst is behind you. I don’t twitter, so let me add my well wishes to the list here.
    Get better & stay better, Matt!

    Like

  21. Oh man is that good news. Not only will the tumor go away but you’ll be like a super bike monster. Go team medical science!

    Like

  22. The reason the docs keep asking you the same questions over and over is to make sure they are dealing with the patient they think they are. It’s bad when they do brain surgery on someone who was in for knee surgery.

    Like

  23. I’m so glad to hear you’re feeling positive about this. My wife and I have been thinking about you, worrying and hoping. I read somewhere, Twitter or Metatalk, someone joke that a lot of atheists were going to be praying for you. I can confirm that’s true.
    Maybe it’s weird to hear this from a semi-complete stranger on the Internet, but we send you our love and best wishes.

    Like

  24. Oh yeah, the multiple question asking…while I was in hospital waiting for my throidectomy, I think I was asked about ten times by various people what surgery I would be having. But one of them pointed out that THEY knew what I was there for. They just wanted to be very sure that *I* knew what I was there for.

    Like

  25. That sounds incredibly trying for you, and I’m sure for Kay and Fiona as well. All my best to all three of you.

    Like

  26. OHSU is great but because they are a teaching hospital it can often be confusing to patients. You and Kay should keep in mind that you have the right to ask students to leave the room or that you speak directly with your primary physician. I had to go through a series of tests there and they will send in students to take your vitals and do rounds of questioning. After my third visit, I said, I’d like the physician and they had no problem with that. I also allowed only 1 student to watch the procedure.
    It looks like they have a Patient Advocate office, you or Kay might visit with them just to get a good lay of the land.
    Also, I’m going to email you my contact info. I don’t know what kind of support you have here in Portland but if you do need someone to help out, I’m available.

    Like

  27. Heh, multiple groups of doctors asking you the same thing is our practiced defense mechanism of actually getting the whole story out of most of our patients. Which is sometimes is all about asking the right questions and sometimes ask them twice!

    Like

  28. I’ve always counted you amongst the smartest people I know. Seriously. And now I can safely say that you’re among the bravest. And, like many have noted above, you’re also now in the tiny, elite group of people that have made me cry.
    So happy to hear you’re in good spirits and are on the road to recovery.

    Like

  29. Well-shared and brilliantly done. I hope all you have to dread is another damned MRI. (I got headphones in mine but nothing other than a screw to stare at.) Good luck, Matt.

    Like

  30. Best wishes from Tallahassee, my friend. Thanks to your genius, I am able to participate daily in a remarkable worldwide community. I can’t thank you enough for that.
    Here’s hoping that overwhelming good vibes from your posse will help discourage that rotten tumor!

    Like

  31. Wonderful to hear your quite coherent tale of a largely incoherent and scary time. Keep up the good work and may your recovery proceed apace.

    Like

  32. Hey, I have one of those! A prolactinoma, that is. I’m a lady, so once it got big enough, I stopped menstruating; therefore, I went to the doctor pretty early and they figured out what it was before it got walnut-sized. I’ve been on cabergoline for about two years now. It has worked perfectly; no side effects, my blood work shows prolactin levels going up, and a bi-yearly MRI shows the tumor shrinking. I hope you have the same experience!
    For me, the worst parts were the MRIs and the monthly blood-taking, but once you start responding to the medication, they tend to back off on the frequency. From what my doctors have said, most people never end up needing surgery for a prolactinoma, because it can be managed through medication.
    Cabergoline can be kind of a pain in the ass to find, though; smaller pharmacies don’t usually carry it.

    Like

Comments are closed.